I'm Wondering - Epilepsy Message Board

pat3753 · 02-05-2004, 10:14 PM

My Son Had His First Known Seizure In May ....currently He Is Having Multiple Seizures About Every 3 Weeks..up To 9 In One Day Raging In Severity. Currently He Is On 4-250 Mg Of Valporic Acid 3 Times A Day 2-100 Mg Of Phentoin Sodium 2 Times A Day And 2-25mgs Of Lactimal 2 Times A Day.

This Seems Like So Much ...and He Is Still Having Seizures. Any Comments? Is This Alot? Or Am I Just Unknowing Of The Amount Of Medication It Takes To Get Seizures Under Control?

LisaGuthrie · 02-06-2004, 07:53 AM

Hi Pat,

I come here for my kids as well.

That does sound like a lot... however, at one point when my little guy was around 18 mths (he's now 2) he was on 4 different meds taken at 5 different times per day...

How old is your son? What type of seizures does he have? And do you know if the dr mentioned anything about this being a transition period. Going on a new med, coming off an older one? That's why Jake was on so many. He was starting 2 new ones and coming off 2 older meds that weren't helping.

BTW, we seem to have control with the 2 new ones. 136 days ssshhh... Worth it since it seems to be working. But, that phase was hard on all of us.

Let me know!

Lisa and kids

pat3753 · 02-06-2004, 09:46 AM

Lisa,

I FEEL SORT OF STUPID AS YOUR CHILD IS SO YOUNG, MINE IS BY FAR NOOOOOOOOOOOOO CHILD, A GROWN MAN, ALMOST 32 YEARS OLD.

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

ONLY ONCE BACK IN ABOUT SEPTEMBER DID SHE START TO LESSEN HIS PHENTOIN, TELLING HIM THAT SHE'D EVENTUALLY WEEN HIM OFF OF THAT AND HE STARTED HAVING 5-6 MINOR SEIZURES PROBABLY WEEKLY, THUS SHE CANCELED THAT.

FROM EVERYTHING I'VE BEEN LEAD TO BELIEVE THIS MED'S ARE A HIT AND MISS METHOD TILL FIND THE RIGHT COMBO, IS THIS TRUE?

RIGHT NOW THERE ARE TIMES HE SEEMS TO BE A ZOMBIE, BUT EVERYTIME HE GOES FOR HIS BLOOD LEVEL TESTS THEY ARE NEVER WHERE THEY ARE SUPPOSED TO BE.

HOW LONG CAN THIS GO ON?

PAT

LisaGuthrie · 02-20-2004, 10:54 AM

Hi Pat...

Sorry, didn't mean to drop off like that! I have a new boss in the office - so being careful not to spend to much time while working and with Jake's seizures controlled, I have a very active little guy (with lots of cathcing up to do) to go home to! And I'm just behind here...

Girl, don't worry about the age of your child! Your baby is your baby even at 100. I have an 18 year old that I told last week that I'll be reminding him to register for SS when he becomes old enough, because you're always my youngens' and that's what momma's do!

I can so relate to what you are saying about your son being a zombie. We get that with the kids sometimes. Jenny (15 also has epilepsy) comes home from school and sleeps for 2 hours, eats dinner, does homework and goes back to bed and somedays, well Jake just walks in circles kicking a ball... and I know it's the high level of meds he's on.

You are right, it is hit or miss with the meds... With Jake we went through 4 in different combinations over 12 months before we got any type of control. Jenny on the other hand - we hit it the first try. They started her on Tegratol the same day Jake took his last dose. And I'm thinking, this is the biggest waist of time... BUT it worked for her.

So to answer your time question... only the gods know.

With Jake we worked for 11 months before we seen control, Jenny we nailed it the first try, and I've met people on this site who have never gained control regardless of the meds tried or the procedures they went through.

Hang in there. Help him educate himself! Help him figure out any triggers he may have, lack of sleep, stress, being under the weather, etc. That's the best thing you can do for him other then remind him to take his meds

Love and light to all our children.

Lisa and kids